What is Anosognosia and Why Does it Matter in Dementia Care?

Anosognosia is a neurological condition in which a person is unaware that they have a particular disease. For people living with Alzheimer’s disease and other forms of dementia, anosognosia can mean they are living in the dark about their condition. 

Neurologist Catherine Madison became a neurologist after being a caregiver to her mother, who died of dementia in 2011. Three years later, she teamed up with Dagmar Dolby to open San Francisco’s Ray Dolby Brain Health Center, where today, she  provides support for the individuals and families navigating a dementia diagnosis, with a focus on community education  about dementia planning and care. According to Madison, understanding this condition can help caregivers more easily step into dementia’s reality — and navigate the journey. Read or watch her in conversation with Being Patient’s Deborah Kan about how to recognize and manage anosognosia:

Being Patient: What exactly is anosognosia?

Dr. Catherine Madison: It’s a term that’s actually about 100 years old, but it refers to a condition where an individual cannot understand or cannot have the knowledge that they have a brain illness. They are incapable of that knowledge because of damage that has been done to the brain. So, it’s a medical condition.

Being Patient: Does anosognosia go hand in hand with a dementia diagnosis, in particular Alzheimer’s disease, where you can’t understand that there is a problem?

Madison: Well, you can’t have universalities. You can’t say that everybody is like this or like that, but your mom most likely did have an element of anosognosia, which is present in 20 to 80 percent of individuals. That’s just consistent with the tremendous variability in it. 

Then you have fear when people with mild impairment can become hyper-aware that there might be something wrong. That, of course, would foster being defensive because they don’t want something to be wrong.  Then you add anosognosia in there— they can’t really see it. I think that further supports their defensive position.

Being Patient: As we age, there are certain signs of aging. In some people, memory loss is worse than in others, but there are signs. I think memory is one of these things that’s easier to compartmentalize.

Madison: You’re right. We do all have those. I have them. I’m sure you do, too, because we’re busy and multitask. We’re traveling and doing all sorts of different things, so we accept that. I oftentimes say to people, “We accept things like spots on your skin with aging. Well, we get spots on the brain too, and so that slows processes down.”  

Trying to come up with [the] name of someone we met three years ago at a party does indeed become more difficult, and even coming up with specific words in conversation becomes more difficult. I liken it to a hard drive that gets over full— but, when those instances start to disrupt normal function, that’s when all the red flags go up.

“We accept things like spots on your skin
with aging. Well, we get spots on the
brain too, and so that slows processes down.”

Being Patient: Tell me a little about your holistic approach to dementia, especially in those early stages.

Madison: I call it a horizontal illness because it affects the individual and everyone who’s connected with them in daily life. Being aware of this condition of anosognosia allows people and family members around the person who’s having difficulty to alter their approach. 

For instance, you, with getting your mom to recognize that there was something wrong, to see a doctor, to get some screening, and to get medical tests to look for something treatable and potentially reversible— that’s all critical. Pushing and saying, “But, mom, I see this,” is only going to make her dig her feet in further. 

So, having in your head that she can’t see this, “Okay, so how can I approach this creatively?” I have actually, in my career, seen couples together because the wife wouldn’t accept that there was anything wrong, and so the husband basically presented this as, “Well, we’re all going in for a checkup.”

As a family member, you could reach out to your mom’s or your spouse’s doctor privately and say, “I’m seeing this and that, I’m very, very concerned, and I want to bring her in. Could you subtly present a cognitive screen as part of your normal checkup and normalize this whole thing to start the conversation?” Then start an evaluation because anosognosia really delays diagnosis and treatment.

“Being aware of this condition of anosognosia
allows people and family members
around the person who’s having
difficulty to alter their approach.”

Being Patient: Is anosognosia more common in one stage than another?

Madison: It becomes more common as the illness becomes more severe. That kind of makes sense— as you have more damage to the brain, you’re going to get more disruption of these circuits that allow us self-referential thinking and can contribute to this condition of anosognosia.

“As you have more damage to the brain,
you’re going to get more disruption of
these circuits that allow us self-referential
thinking and can contribute to this
condition of anosognosia.”

Being Patient: Can anosognosia be present through the whole course of dementia?

Madison: Absolutely. In my years of working with people, some of the ones who had the most distress were those who were aware of the changes. For those people who had anosognosia and weren’t aware of the changes, their families had more distress.

Being Patient: Does everyone with Alzheimer’s end up having anosognosia at some point?

Madison: I can’t answer that. Specifically, no one has studied it. There’s a lot more research on anosognosia, which is good because scientists have gotten very interested in mapping all these brain circuits in functional MRI and everything. Now, more research is going into it, but the more we understand it, the better we can work out care arrangements that are good for both parties.

Being Patient: Where is the anosognosia in the brain? Do we understand what is causing this, or is that unknown?

Madison: That’s where the research is being focused because it’s contributed to by multiple regions within the brain and these networks, these connections within the brain. That’s where a lot of the research is going right now.

Being Patient: You are saying that it’s really important for everybody, the entire family, to understand anosognosia and how to deal with it.

Madison: Right— so they can come up with creative approaches. We talked about going to the doctor as a couple to normalize getting care. I often advise [on how] to try and get help in the home, like if a husband notices his wife is having a lot of problems. I’m taking on women because we’re the most people who come down with dementia. 

But, if someone notices that their mom or wife is not taking care of things around the house, it’s best not to say, “Mom, you need help in the home.” It’s better to say, “Mom, I’ve got this friend who just lost her job, and she was working helping this family, and I was hoping you could help her out. She’ll maybe work with you like 15 hours a week, just picking up around the house and helping you with errands and everything. Mom, it would make me feel so much better and really help this person.”  

Take the focus off the person who needs help and put it on someone else to engage them in their good nature and want to help someone else. It’s not their problem, right?

“Take the focus off the person who
needs help and put it on someone else to
engage them in their good nature and
want to help someone else.”

Being Patient: How do you talk to your loved ones about cognition, such as getting them to the doctor for an evaluation? What is your advice?

Madison: Well, it’s kind of going back to that same process of normalizing it and going in with them. I’m a big advocate for starting difficult conversations by engaging in [them] yourself. Aside from getting someone in to see the doctor, which you’re right— it can be challenging— I think we all tend to think about planning for what we might want in life, but we’ll get around to that later. 

Just like we’ll get help in the home when we need it, and we can all facilitate that by planning and talking about it earlier. There’s this really great card game called Go Wish. It’s fabulous. It’s a card game developed by a group called the Coda Alliance, and it talks about what our priorities would be at the end of life. 

You play this as a group and sort the cards into different priorities. What’s most important to you at the end of life, what’s middle of the road, and what’s a discard. They range from priorities such as, “I want to be in my home,” to “I want to be in the hospital,” and “I want to be surrounded by family,”  to “I want to be alone.” It’s a fabulous way to start a conversation about what is important to you at the end of life, and by doing this, again, it’s all about starting these conversations.

The same thing with healthcare directives. I have worked with families where one person has some mild impairment, and I’ve worked with them and had the couple both complete their directive and where they’re kind of taking guidance from each other because they’ve been doing that for the last 40 years. So, it seems safe and okay. This is a great conversation starter for a difficult conversation.

Being Patient: How do you have a conversation with someone who says “I don’t want to be a burden?”

Madison: It’s scary for all of us. That whole concept of “I don’t want to be a burden” is pretty common. I’ve heard that from many, many people over the years. So, what does that mean? That’s open to interpretation. You can define it really, really meticulously or you can give some general guidelines around it. 

What I have said to my family is if I ever am diagnosed with a dementia or I reach a point in my life where I’m no longer able to make my own decisions, take care of myself, and live independently, I don’t want any diagnostic tests or treatment that would prolong my living or my dying. 

Because if I’m not in control of my life, I don’t consider that living. That means if I come down with an illness, be it pneumonia or a severe urinary tract infection, I want pain medications because I look at that as the potential to make an exit. By saying I don’t want to be a burden and putting guidelines like that around it, specifically saying I don’t want diagnostic tests and treatments that prolong my living or dying, my kids understand in general terms what I want. If you don’t have a conversation, you’re left with trying to extrapolate from the brief conversations you may have had with your loved one in the past.

“If you don’t have a conversation, you’re left
with trying to extrapolate from the brief
conversations you may have had with
your loved one in the past.”

Being Patient: What did you learn from your personal experience caring for your mother with dementia?

Madison: Number one, I learned that it’s extremely painful. I was 20 degrees younger at the time. I had three small children. I was working, and my father basically had a breakdown. We couldn’t have my mom placed until I was the designated Power of Attorney. No one would accept my mother because my father had just gone on a break.

For me, I learned how hard this is and I can therefore relate very well to what families are facing. [I can] get in the trenches with them to try and problem-solve. It also allowed me to connect very well with Dagmar Dolby when she faced this diagnosis with her husband, Ray, the amazing entrepreneur and sound engineer. 

That’s what led us to start the Ray Dolby Brain Health Center to try and treat the patient and the family. My experience taught me how to work in the trenches, and I do that with families because this is a really tough journey.

“My experience taught me how to
work in the trenches, and I do that
with families because this is a really tough journey.”

Being Patient: What is your advice for families as they navigate the stages of Alzheimer’s disease?

Madison: I’m afraid it changes with every stage. The advice has got to change with every stage, but staying grounded in anosognosia [and] creating different realities is useful. Keep in mind that your loved one is in a different reality because of the illness that has affected their brain. Try to stay grounded in your reality, but find a common meeting place for the goal that’s good for both of you in their reality. 

I talk with people about not just the quality of life. We do absolutely want to optimize quality of life, but in the very later stages of dementia, the scope of life gets smaller as well. We need to think about that as we make decisions around treatment. 

Does the scope of life get so small that maybe we shouldn’t focus on prolonging it? When someone is bed-bound and being fed and changed, the quality could still be good, but the scope has gotten so small I think we need to sometimes step back and say, “What is our goal here?”

“Keep in mind that your loved one
is in a different reality because of the
illness that has affected their brain.”

Being Patient: Do you have any wisdom on dementia care you want to leave with us?

Madison: I think probably the most important thing to keep in mind is stuff happens. We can’t control everything. No, we can’t make it perfect. We can’t fix it. Just roll with the journey as it goes along, and recognize you’re doing the best you can.

You can’t fix everything. Let that go and get help. Use the concept of the different realities and gifting who needs help here to get help in the home—but get help so you can take care of yourself. For all of us, plan ahead.

“We can’t control everything.
No, we can’t make it perfect. We can’t fix it.
Just roll with the journey as it goes along,
and recognize you’re doing the best you can.”

Being Patient: Do you have a cheat sheet for anosognosia and dementia caregiving?

Madison: I don’t have a cheat sheet. I am finishing up a very short book about it. I just added “cheat sheet” because the concept is groundbreaking. 

When you’re providing care, one of the biggest things for the caregivers is always getting someone out for a walk. “Oh, she won’t go out for a walk.” If you’re telling her she needs to go out for a walk, no, she’s not going to see the need. Maybe if you try something different, you have to custom-tailor this. 

This is around person-centered care, which is the right way to approach everything. You know that you need to get out for a walk. Your doctor told you that you need some exercise, but you’d be so much more comfortable if she would accompany you again. It’s not for the person who’s impaired. They don’t see their need, own it for yourself, that they’re helping you and that can sometimes really work.

Katy Koop is a writer and theater artist based in Raleigh, NC.